Group support good for those with Parkinson’s, and their care partners

August 10, 2016

It was such a small thing. A quivering chin.

But that was the telltale sign of Parkinson’s disease for Lea Nixon, 84, of Atlanta. She was given this seemingly out-of-the-blue diagnosis by her regular doctor during a routine checkup five years ago. She dismissed it until it was later confirmed with further testing at a Mayo Clinic. Husband John, also 84, had already observed his wife’s struggles with the neurological movement disorder.

Next came a series of life disruptions. A move out of their “dream home” in Sandy Springs and into an apartment at the Lenbrook senior community in Buckhead. Their roles switched. She became the introvert; he the extrovert. He spoke for her when her voice became wispy and weak, or the words wouldn’t come to mind because of the brain fog. Her gait became slower and unsteady. Her legs would freeze into place for no apparent reason.

Parkinson’s is progressive and chronic, resulting in rigid muscles, slowness of movement, fatigue and a host of other challenges, both physical and mental. There is no cure.

It can also be isolating. For Nixon, the pushback has been a Parkinson’s support group she and another resident organized at Lenbrook. Once a month, about 15 or so meet to share their experiences and tips on adapting to life’s daily difficulties. They keep up with the latest research and have hosted top-flight speakers such as neurologists from the Mayo Clinic and from Emory University School of Medicine.

“It helps us,” Nixon said of sharing the Parkinson’s journey. “When we’re in a tough place, we let each other know.”

The Lenbrook group, which is open to the community, is one of 30 Parkinson’s support groups across the state. Lynn Ross keeps track of them all as coordinator of information and referral for the American Parkinson Disease Association Georgia Chapter.

Some groups have been meeting for more than 15 years, and members have bonded like an extended family. It’s not unusual to have spouses continue to attend after their loved ones have passed away. The groups become important repositories of information and resources, but “the greatest support is in what members give each other,” said Ross, a licensed social worker with the movement disorder program for neurology at Emory University.

“We want them to learn from each other. Everybody can share what works and what doesn’t work,” she said.

Care partners can also learn from each other, and Ross said it’s important that they attend the meetings, get to know one another and talk out their own stresses.

“Every group needs a place to vent,” she said.

One of the facilitators with the Lenbrook support group is licensed social worker Patricia Tatro. Her role is to assist with communication and provide resources that help people remain hopeful at different stages of the illness, she said.

“They should always be able to connect with something that will bring hope and happiness. Even when life is challenging, you can focus on what you can do and how you can adapt,” Tatro said.

She also helps families talk about the illness and how it impacts them.

“There’s no better person to provide support than the one who is going through the same thing. While your experience won’t be exactly the same, there are similarities,” she said.

Sharing information and ideas for handling different situations is “rich” at Lenbrook, Tatro said. Nixon explains how she can keep her legs moving at a steady and fairly good clip when walking the halls at Lenbrook if she looks down at the carpet and follows its patterns. Another finds that singing helps her get “unstuck” when the leg muscles just won’t move.

Tatro also fosters conversations with members about their careers, family life, travel — the joys of life. She wants them to know each other and be known as individuals, not just people with Parkinson’s.

“My belief with anyone who has a chronic illness is that the illness is only part of who they are,” she said.

PARKINSON’S SUPPORT GROUPS

FULTON COUNTY

* Atria Northpoint, Alpharetta Room, 100 Somerby Drive, Alpharetta. Meets monthly on first Wednesday at 2 p.m. Contact: Mary Du Bois, 843-830-1967.

* Westminster Presbyterian Church, 1438 Sheridan Road N.E., Atlanta. Meets monthly on third Tuesday at 1 p.m. Contact: Mary Lou Bassett, 404-892-9595, [email protected].

* Peachtree Road Methodist Church, 3180 Peachtree Road N.E., Atlanta. Meets monthly on second Wednesday at noon. Contact: Sherry Wright, 404-842-1016, [email protected].

* Lenbrook Retirement Community, 3747 Peachtree Road N.E., Atlanta. Meets monthly on first Thursday at 10 a.m. Contact: Lea Nixon, 404-264-3354, [email protected]; Sheila Woodward, 404-262-4522.

* Roswell United Methodist Church, 814 Mimosa Blvd., Roswell. Meets monthly on second Sunday at 4 p.m. Contact: Robin Cleveland, 678-819-3915, [email protected].

DEKALB COUNTY

* Dunwoody Baptist Church, 1445 Mount Vernon Road, Atlanta. Meets monthly on third Tuesday at 7 p.m. Contact: Ellie Kahn, 770-698-0749,[email protected].

COBB COUNTY

* Aloha to Aging, 4608 Lower Roswell Road, Marietta. Meets monthly on first Tuesday at 10:30 a.m. Contact: Dawn Reed, 678-439-1177,[email protected]

* Robin’s Nest Adult Day Care, 470 N. Sessions St., Marietta. Meets monthly on first Monday at 10 a.m. Contact: Robin Cleveland, 770-919-8580.

* Aline Wolfe Adult Recreation Center, 884 Church St., Smyrna. Meets monthly on fourth Wednesday at 2 p.m. Contact: Carl Proctor, 404-275-9383, [email protected].

GWINNETT COUNTY

* Glancy Rehab Center, 3215 McClure Bridge Road, Duluth. Meets monthly on second Friday at 1:30 p.m. Contact: Kelly Dunham, 678-312-6167, [email protected].

* Centerville Community Center, 3025 Bethany Church Road, Snellville. Meets monthly on first Thursday at 10 a.m. Contact: Bill Johnson, 770-978-1433.